Stress management, mindfulness, and peer support needs among adolescent and young adult cancer survivors: a qualitative interview study

1 Introduction

In the United States, adolescent and young adult (AYA) cancer incidence—new cancer cases among those aged 15–39 years old—has risen substantially within the past few years, with breast cancer, testicular cancer, and thyroid cancer comprising more than one-third of new cases (1). In 2020, there were about 2.1 million AYA cancer survivors (AYA-CS) living in the U.S. (2)., though high survival rates suggest that this number may have increased since. At present, the 5-year relative survival rate among AYA cancer patients is 86.1% (1), compared to 64.4% in adults over 40 years old (3). Across the board, research has shown that survivorship may be fraught with many long-term impacts of cancer, leading to lower quality of life (4) and greater mental health problems (5). The experience of survivorship, however, may be further exacerbated for AYA-CS, who must contend with survivorship-related challenges during the critical developmental stage of emerging adulthood (EA). Indeed, past research has suggested the significant mental health burden (6, 7), lasting into middle or older adulthood (8), of AYA-CS, as well as their challenges with social relationships (9–12). Studies also show that a significant portion of AYA-CS do not receive formal psychological treatment (9, 13), and there is a dearth of resources that are responsive to their specific needs (14). Despite this, AYA-CS remain an understudied population, and knowledge gaps regarding their stress management techniques and experiences applying evidence-based coping strategies, like mindfulness, persist. The lack of research in this area begets inadequate resources and interventions to serve a growing population of young cancer survivors.

AYA-CS represent a distinct oncology population due to their developmental heterogeneity, cancer diversity, and unique need for supportive care during this life stage (15). EA, the developmental stage in which most AYAs find themselves, is characterized by major transitions such as pursuing higher education, beginning a career, becoming financially independent, forming romantic relationships, and beginning a family (16). Although the EA framework applies to the broader population of young adults, AYA-CS must navigate survivorship alongside these developmental tasks, elevating their risk of impaired mental health (17). Cancer compounds these stressors: treatment and post-treatment result in physical (e.g., hair loss, weight fluctuations), biological (e.g., fertility problems), social (e.g., low self-esteem affecting relationships), and financial difficulties (18, 19). These factors contribute to heightened stress during and after treatment, with approximately 32%, 49%, and 24% of AYA-CS experiencing psychological distress, anxiety, and depression, respectively (20), highlighting the substantial mental health burden in this population. Consequently, the transition into survivorship may disrupt identity formation, independence, and future care planning during a life stage that is already full of instability and change (21).

AYA survivorship experiences are characterized by mental health challenges, such as medical anxiety and disruptions to developmental milestones that negatively impact educational trajectories, romantic relationships, fertility, and social support networks (22, 23). Consistent with these patterns, young adult CS frequently report psychosocial and developmental difficulties, such as fear of relapse, fertility concerns, survivor's guilt, isolation, and feeling “behind” in life, while navigating the transitions of EA (24). At the same time, however, survivorship experiences can vary based on type of malignancy (e.g., breast cancer vs. leukemia), the specific EA milestones disrupted, and socioeconomic disparities (25). Gender also accentuates survivorship variability, with previous studies reporting that AYA women experience significantly elevated reproductive distress compared to AYA men (26). These variations underscore the need to continue exploring survivorship through patient-centered approaches that can illustrate the nuanced ways in which AYA-CS navigate psychosocial issues during EA and survivorship.

Few studies have sought to understand how AYA-CS cope with their day-to-day stressors. In a qualitative study of AYA between 15 and 24 years old (N = 16), coping strategies described by participants included seeking social support, focusing on the moment or controllable aspects of their lives, and making meaning out of their experiences (27). In this study, all participants were diagnosed within the previous 24 months of interviews, and 14 had completed planned treatment. These findings begin to shed light on how AYAs individually manage their emotions and distress but leave some gaps regarding AYA survivorship specifically. Study eligibility was based on the timeframe for diagnosis, rather than treatment completion. Although interview data suggested that AYAs' coping strategies changed over time as they transitioned into survivorship (27), the authors did not provide information regarding how many months the participants were in post-treatment. Post-treatment, adult CS broadly experience increasing disconnection from their care team and lose a critical source of support, leading to unmet informational needs and feelings of abandonment, neglect, and isolation (28, 29). As such, it is possible that AYA-CS who are further along in survivorship may be at greater risk of poor mental health, given the duration of time spent trying to independently navigate the post-treatment transition while feeling alienated by the health system and absence of support (29).

Evidence-based stress management strategies, including practicing mindfulness, offer a potential avenue of addressing the unique psychosocial needs of AYA-CS. Previous research has demonstrated that mindfulness-based interventions (MBIs) have alleviated psychological distress among cancer populations (30). MBIs may be especially relevant for AYA-CS as they may reduce psychological distress, uncertainty, medical anxiety, and other challenges related to altered developmental trajectories during survivorship (31). Consistency is essential for effective mindfulness practice, with habit formation typically occurring after approximately four weeks of repeated practice (32). However, several barriers imposed by the competing demands of EA (e.g., school/career responsibilities, time constraints), as well as the physical toll of post-cancer treatment (e.g., fatigue), may pose significant challenges in maintaining or establishing the routine necessary for reaping the benefits of mindfulness (33). Additionally, practicing mindfulness may also bring emotional discomfort to the individual, as sitting with oneself may increase awareness of negative feelings and exacerbate existing pain (34).

Qualitative approaches are a valuable tool in gaining an in–depth understanding of individuals’ lived experiences, perceptions, and behaviors related to stress management. While previous studies have explored the psycho-social challenges among AYA-CS, there remains limited understanding of how AYA-CS interpret, navigate, and manage these stressors in their daily lives. Therefore, this qualitative study seeks to fill this gap in our understanding, exploring how AYA-CS appraise survivorship in the context of EA, their day-to-day stressors, and their personal strategies to manage their psychosocial health. Findings have the potential to shed light on the nuances of survivorship among AYA-CS, which may in turn inform future intervention development, research, and evaluation.

2 Materials and methods

2.1 Research questions

This qualitative study was guided by the following research questions: 1) How do AYA-CS describe their day-to-day stressors? 2) How do AYA-CS manage their stress? 3) How do they describe their experiences using mindfulness to cope with stress? 4) How do AYA-CS perceive the role of peer support and accountability in managing stress and sustaining well-being?

2.2 Participants

The sample comprised 19 AYA cancer survivors between the ages of 22 and 35 (M = 28.3; Mdn=28.5). Across the sample, years since completing treatment ranged from 1 year to 28 years (M = 9.65; Mdn=5.75). All participants identified as cisgender, with 8 (42.1%) identifying as male and 11 (57.9%) identifying as female. The majority of participants were heterosexual (n = 16; 84.2%) and white (n = 12; 63.2%). Three participants were Asian (15.8%), three were Latine (15.8%), and one participant was Black (5.2%). Participants’ self-reported diagnoses included: Hodgkin's lymphoma, lymphoblastic leukemia, mantle cell lymphoma, medulloblastoma, osteosarcoma, clival chordoma, rectal cancer, and sarcoma. Participants were diagnosed with cancer between the ages of 3 and 33 and had treatments such as chemotherapy, radiotherapy, and surgical intervention (e.g., shunt, finger implants).

Study participants were recruited via purposive sampling through a community cancer survivorship program for young patients who have completed cancer treatment and a national non-profit organization whose mission is to connect the AYA cancer community, including patients, survivors, caregivers, and health professionals. Snowballing sampling was also utilized. Upon completing the interview, participants were asked to share the recruitment flyer with those in their community who may be interested in participating in the study.

The survivorship care team shared the study recruitment flyer with patients who met the eligibility criteria. Interested patients gave consent to their treatment provider to share their contact information with the study team. To minimize the possibility of coercion or undue influence, all communication related to the study after this step was facilitated by the study team.

The flyer was also distributed via the non-profit organization's listserv and social media (Instagram). The study team was also invited to distribute the flyer to attendees at the non-profit's annual national gathering for the AYA cancer community. Interested individuals were instructed to email the study team to schedule a screening call via phone or videoconferencing (Zoom).

To be eligible, individuals had to be 18–39 years old; have a cancer diagnosis; have completed treatment at least one year ago; and be comfortable speaking conversational English. We excluded individuals who did not meet these criteria, as well as those who were being treated for posttraumatic stress disorder (PTSD), psychosis, or epilepsy/seizures. MBIs are contraindicated for these conditions and may trigger adverse effects, particularly when practiced without supervision (35, 36). Screenings with individuals who were recruited via the non-profit's social media and listserv contained additional probes and follow-up questions since online recruitment strategies face the challenge of fraudulent participation (37). For instance, while participants recruited via the community survivorship program were not necessarily asked for cancer-specific information, those who found the study through online means provided specific information such as their specific diagnosis and corresponding treatment (37). Recruitment for the study was closed once saturation, or when no new information emerged based on the a priori codes, was reached (38, 39).

Twenty AYA-CS were identified through the community cancer survivorship program. Of these, 16 (80.0%) were reached and screened. Thirteen (81.3%) met eligibility criteria, while two were less than one year post-treatment and one was in treatment for post-traumatic stress disorder. All thirteen eligible individuals were enrolled into the study (100%).

After the non-profit organization posted the recruitment flyer on social media (i.e., Instagram), eleven individuals contacted the study team. However, all eleven were flagged as probable fraudulent participation based on indicators that have been described in existing literature (37). Multiple responses to the recruitment post were received within a short period of time, and they came from senders with generic email addresses, following the pattern of a common first and last name (e.g., John George, Charles Alexander) with a series of numbers (e.g., johngeorge999, charlesalexander111). Some messages were characterized by short, general statements (e.g., “I am interested in the study.”), while others listed the eligibility criteria from the recruitment flyer verbatim. These same messages were received from different email addresses which were intended to appear as unique interested individuals. Following the non-profit's annual AYA community event, six individuals contacted the study team. Four were recruited via the event, and two were recruited via snowball sampling. All six were reached, screened, and enrolled. From the non-profit, four of seventeen individuals were reached and screened (26.7%), and all four individuals were enrolled (100%). Two individuals, recruited via snowball sampling, were reached, screened, and enrolled (100%).

2.3 Data collection

Data were collected via a brief demographic questionnaire and one-on-one semi-structured interviews that were conducted over Zoom. The demographic questionnaire collected information such as age; years since completion of cancer treatment; psychiatric diagnoses; gender identity; sexuality; race/ethnicity; and education level. The questionnaire also contained a field for participants to enter a pseudonym of their choice to be linked to their data. Discourse around researcher-assigned pseudonyms has suggested that this practice may lead to some participants feeling that they have “lost ownership” of their data (40). Yet, anonymity is a core assumption of ethical research standards. Self-chosen pseudonyms address both tensions by providing participant agency in the research process and may even foster trust between participants and researchers (41).

An interview guide (see Supplementary Appendix), organized into sections about stress management, mindfulness practice, peer support, and engagement factors, was utilized as a foundation for the interviews, though this form of data collection tends to be participant-driven and allows for flexibility based on what participants share. All interviews were conducted by the first author (SC). Example questions include: How do you normally manage stress? Can you tell me about any experiences you might have with mindfulness? Thinking about some of the apps that you use on your phone daily, what are some of the features that tend to draw you in?.

For security, a new Zoom meeting room was created for each participant interview, ensuring that participants received a unique link, meeting ID, and password. This ensured that no other individuals could have access. The first author (SC) conducted interviews from a private space, and participants were asked to similarly join the Zoom meeting from a private space to maintain their anonymity. Interviews lasted between 39.9 and 62.5 min (M = 48.8; Mdn=46.8). All interviews were audio-recorded via the built-in feature on the Zoom platform. The audio files were then transcribed and reviewed for accuracy and de-identification. During and after each interview, the interviewer recorded field notes to capture contextual observations and reflections, which were later used to support theme identification during transcript analysis. Participant-selected pseudonyms will be used when reporting data.

2.4 Analysis

Data were analyzed using codebook thematic analysis (42). Thematic analysis is known as a method to identify, analyze, and report patterns in data. These themes allow researchers to organize and describe their data in rich detail (43). Codebook thematic analysis applies a structured approach to coding qualitative data by utilizing a codebook or coding frame. In this study, we used thematic analysis as a constructionist method, wherein meaning is co-constructed between the researchers and research participants.

A priori codes were developed by the first and third authors (SC and GK) based on the research questions and concepts outlined in the supportive accountability model, as well as the theory of emerging adulthood (44). Examples of initial codes included: general stressor, AYA-CS-specific stressor, stress management, mindfulness experience, and connecting with other AYA-CS. Each initial code was given an operational definition to better guide the coding process (45). As the first and second authors (SC and AK) coded the transcripts, additional codes were generated inductively (e.g., fertility and scanxiety). After coding was complete, the first and second authors met to generate preliminary themes, which were subsequently continuously refined and named such that they captured participant experiences and the meanings attached to these experiences. Themes were only considered finalized once the two authors reached mutual agreement on them. One of the coders (AK) was not involved in data collection, allowing for a new perspective to be incorporated during analysis.

Strategies for rigor included peer debriefings, memoing and field notes, conducting negative case analysis, and engaging in reflexivity by challenging our biases and assumptions (46). The first author (SC) is a doctoral student in social work with strong qualitative training and research experience focused on technology-facilitated social processes, including migration, identity development, and emerging adulthood. They had no prior relationship with participants, though their prior qualitative research and clinical experiences supported rapport-building during interviews. The second author (AK) is an undergraduate student who received supervision from the first and third authors (SC and GK) during analysis. Reflexivity was maintained by critically examining assumptions about cancer survivorship (e.g., the extent to which being a survivor was important to participants); mindfulness (e.g., mindfulness is universally beneficial); and peer support (e.g., all AYA-CS might feel connected to one another). To manage these biases during data collection, the first author (SC) recorded post-interview reflections in field notes. The first and second authors (SC and AK) documented analytic memos while coding the data and generating themes. Finally, throughout data collection and analysis, all team members engaged in ongoing discussions regarding positionality, participant perspectives, and potential influences on interpretation.

3 Results

Thematic analysis yielded three themes and seven subthemes that captured participants' experiences of survivorship, stress management, mindfulness, and peer connection. Table 1 provides an overview of the themes, subthemes, brief definitions, and exemplar quotations that illustrate these findings. The themes are presented below with supporting participant quotations and accompanying interpretations.​‌

Table 1. Themes, subthemes, brief definitions, and exemplar quotations from AYA-CS interviews.

3.1 Theme 1: “the cancer was the main plot, and now it is a couple of chapters in the book of life:” the fluid salience of survivorship for identity and experience

3.1.1 Self-Identity

The place of survivorship in self-identity and day-to-day life varied across the sample, typically dependent upon when they underwent treatment, diagnosis severity, and treatment intensity. For some, survivorship remained a central part of how they understood themselves; for others, it had receded into the background of everyday life. For participants like Francis, a 26-year-old man, “post-cancer” life was, plainly, life. Having completed treatment 14 years earlier, he explained that being a survivor did not play a defining role in how he saw himself, “to the point where I forget, not that I had it, but that… I'll bring it up really casually by accident.” When others react with surprise, Francis would typically downplay the significance of cancer in his life, working to soften their emotional responses and reduce the symbolic weight they placed on his diagnosis:

I'm like, “No. It’s fine. I was a child. It was whatever,” but I forget that some people might react like “That’s a heavy thing you dropped in this conversation.” No, that was just a thing that had happened to me when I was a child.

This concept of cancer forming a distant backdrop to life was not necessarily limited to those who had completed treatment several years earlier. In fact, Veronica, a 35-year-old woman, finished treatment just over one year ago at the time of her interview. She shared that others probably perceived that she was “giving off ‘I’m still in it [active cancer treatment],” but to her the cancer no longer dominated her life. She likened it to a novel, where the cancer used to be “the main plot,” but now it had faded into the background, instead becoming “just a couple of chapters in the book of [her] life.” Yet, even as the salience of her cancer history had diminished, it continued to hold a quiet yet persistent presence in her life. She conceded that on rare occasions, although her treatment was “contained” to a short period of time, thinking back to “that summer when I lost the ability to walk, for example, that just fills me with such sadness and dread.”

3.1.2 Day-to-Day disruptions

Some AYA-CS identified some mild but persistent reminders of cancer in their lives, such as having implants following bone resection, treatment side effects like neuropathy, or familiar sensations or smells. Cherry, a 23-year-old woman, shared that because of her finger implants, she “just [had] to be a little more careful than the average person” while doing daily activities. Anakin, a 25-year-old man, also described his neuropathy as only a slight stressor: “It's not like a new world. It's there and it does mess up some stuff, but I can live without it.” Generally, participants identified that “anything that reminds you of the cancer is going to bring you back for a second.” Barbara, who was 24 years old, mentioned that hair falling out and the smell of hand sanitizer could be reminders of the cancer.

In contrast, participants like Ashley, a 24-year-old woman, felt the weight of their cancer history even more regularly, with anxiety particularly heightened as annual surveillance appointments neared: “[My health in the long run] is something that also adds to a lot of my worries. It's that fear of [the cancer] coming back, especially when I have these appointments like once a year.” Unlike Veronica, Ashley felt that her cancer history seemed to be ever present. Steve, a 27-year-old man, similarly acknowledged that the possibility of recurrence was something with which he struggled to accept:

I had to forcefully come to terms with it, because even though my survival rate was relatively good, there’s always that certain “what if.” I had to come to terms with it and come at peace with it, and I think I did… I thought I did at the time, because I didn't see another choice.

Steve had wrestled with the possibility of cancer recurrence. Although he believed he had largely come to terms with it, he described an ongoing cycle of accepting this reality and actively resisting it. Though rare, flashbacks further compounded this fear: “I do get episodes where I feel like I'm put right back in the hospital. I feel like, ‘Wait, wait, wait. Remember, it was a decade ago. You're fine.”

In contrast to Ashley and Steve, Tev, a 30-year-old man, felt the continuous, concrete, and disruptive impact that cancer had on his life. He described how survivorship had left him “behind in life,” struggling to find a job and to live independently:

…you went through all of that, and it’s literally no one to help you when you're done with it all. Your family is still there, but there’s so much that they could do. At a certain point you got to step out on your own.

Although Ashley also described feeling “behind” because she was “turning 25 and still not exactly where I want to be,” she did not attribute this to being a cancer survivor. Instead, she framed her struggle as a broader sense of dissatisfaction with her position in life and feelings of discontent despite accomplishing her career goal: “The feeling wasn't right. It's like, ‘Is this really what I wanted?”

3.1.3 Relationships and family-planning

Concerns about the future were also common. Issues surrounding fertility and starting a family, for instance, were described by male and female participants, though women shared about their concerns in this regard more often than men. One male participant, IslandCat, noted that although he was not planning to have any children soon, he still worried about how treatment may have affected him: “The only thing, an ongoing stressor, would be the whole fertility aspect. I was told at the time with diagnosis [that] chemo can make you infertile. I'm still open to the idea of children at some point.” Although this was something that occasionally made him uneasy, IslandCat also acknowledged that he held a more privileged position than others, especially as a man working in healthcare: I'm in a job where I can afford the storage fees and stuff to not have a definite plan… if I was on a very strict budget for income and stuff, it might make it more stressful. Or if I was a woman or whatnot and was on the biological clock type thing. For me, I could as a man, I can have kids whenever I want.

Indeed, female participants seemed to be faced with this reality more often. In addition to their fertility status, they needed to consider the strain on their bodies if they were to carry a baby to term. For example, Ashley, at her annual visits to the survivorship clinic, was repeatedly warned of the risks that she could encounter if she became pregnant:

They tell me, “Oh, if you're going to have kids, it’s going to be a lot on your heart, so when you have kids, you have to make sure [of] all these things.” That’s something that I realized [is] going to have to be a part of my life forever because I did go through cancer.

Another participant, Hope, described her fertility as “up in the air.” At diagnosis, she had stage 4 cancer and there was, as a result, no time for her to undergo fertility preservation before treatment. After treatment, however, the insurance would not cover fertility preservation, and “I don't have $10,000 to $15,000 laying around.” Beyond this, “they say that with my treatment, I'll likely go into real menopause early, so it's the [biological] clock everyone talks about. It's like that's also sped up.” Her current stage of life further compounded this stress. At 29 years old, Hope was frequently attending her friends’ baby showers, which triggered thoughts about what her own future would look like:

The thing is, too, I don't even know if I want kids. It’s just to have the option is what I'm really struggling with right now… [I’m] going to shop for baby clothes and then all the presents, and it’s like, “My god. These are so cute. Do I want to be [pregnant]?”

Family planning, however, in Hope's eyes, presupposed finding a long-term partnership. At the time of the interview, she had a partner, but Hope remembered the moment, after completing treatment, when she realized that dating would never be “normal” for her. In every relationship, the conversation about her cancer history would be inevitable:

“[My partner] would have to be my caretaker if my cancer comes back, if I have a relapse. [Are they] willing and ready to do that?” I think that’s kind of what was top of mind, just that it’s not over.

3.2 Theme 2: “you’re not always going to have the motivation to do it:” applying self-management and accountability to maintain stress-reducing habits

3.2.1 Exercising accountability

While participants named many stressors, both cancer- and non-cancer-related, they also shared multiple ways that they engaged in managing stress and regulating their emotions. All 19 participants discussed leveraging social support from family and friends. Tev, for instance, described the significant role of his family and friends, imagining that “without them, I would honestly be super, super depressed.” Other prevalent stress management strategies were exercising, reading, and playing video games. Participants shared that when starting to exercise, they were sustained by intrinsic motivation, knowing that exercising would benefit their physical and mental health. Some, like Maria, a 31-year-old CS, pushed herself to exercise, despite chronic fatigue and long work hours, because she viewed survivorship as “a second shot at life.” She also shared that growing up, her father was “always on-the-go” and that was “just how I was raised.” This norm of keeping busy helped her to maintain the habit of exercising. To sustain her routine, Maria reduced barriers by keeping workout equipment in her basement, allowing her to exercise even when her fatigue was worse than usual or when she had to work later hours.

Maintaining some of these habits, especially exercising, however, did not come with ease. Participants shared that they encountered instances in which they felt unmotivated or experienced more resistance. In this context, many, like Anakin, emphasized the significance of maintaining self-discipline:

I don't really want to go to the gym. I don't want to drive out. But if you're disciplining yourself, like, “Hey, every day after work, I go to the gym and I do an hour of this,” it'll become a habit, and then you can kind of do it.

Steve also relied on his “iron discipline” to maintain the routine of going to the gym, which, over time, improved his self-image, physical health, and, subsequently, his intrinsic motivation:

I'm starting to like the way I feel, like the way I look, and then it became that. It matured into ‘I want to do this for myself…’ I want to say 95% of the time, work out every day… There are times when I feel like I have to drag myself, but for the most part, I want to do it.

Importantly, Steve balanced his expectations with grace and self-compassion, acknowledging that “I'm human. I'm not perfect.” When he occasionally skipped the gym, be it for one day or for one week, he would remind himself, “I got a whole life to live and responsibilities.”

Natasha, a 22-year-old woman, also ran into challenges with intrinsic motivation when she first started exercising. Although the reason she wanted to start this habit, to improve her mental and physical health, was important to her, Natasha recognized that “you’re not always going to have the motivation to do it.” To help herself remain accountable, she started sending pictures to her parents and two friends as a simple way of saying, “Okay, I did it [exercised] today.” Doing this helped “get the ball rolling,” and she believed that “subconsciously… it kept me accountable.” Natasha noted that she intentionally avoided negative motivators like shaming herself or feeling “forced” to exercise, focusing instead on positive motivators like reminding herself of the benefits: “If I say I know I’m going to feel better afterwards, that is like, ‘Okay, then yes, I’ll do it.” Accountability was also utilized by some participants on a larger scale such as through digital social platforms like Strava and Instagram. Hope enjoyed the ability to give and receive “kudos” on workouts, as well as the ability to run the same routes or do the same workouts as others in her social network. Meanwhile, Francis used Instagram to be accountable to his personal reading goals, posting about interesting books that he had been reading to share with his own social network.

3.2.2 Barriers to practicing mindfulness

While exercising was among the most prevalent strategies that participants used to cope with their stress, fewer described using slower-paced strategies. Six participants (31.5%) mentioned engaging in activities such as reading and journaling, and even fewer (n = 4; 21.1%) actively practiced mindfulness.

Most participants recalled that journaling and mindfulness were common coping strategies introduced to them while they were in treatment, but few continued to engage with these practices. One participant, IslandCat, shared: “I hate journaling. People tried to get me a journal. I cannot do it. To this day, I can't stand journaling.” For him, openly talking through challenges felt far more effective than writing them down: “I’d rather tell you all my problems than write it down. Who's it going to help if I just write it down? Nobody.” In contrast, Maria tried to journal daily, and on days she could not, she would still utilize an app that prompted her to take a moment to acknowledge things for which she was grateful that day. Gratitude generally served as her motivation to exercise on days when she felt highly fatigued; she kept reminding herself that “not a lot of people make it this far, or [sometimes] they do, and then they have a recurrence and end up not making it or have to have another surgery that they have permanent effects from.” Her philosophy, though it did not explicitly reference mindfulness, paralleled the main principles of mindful practice:

Tomorrow is not guaranteed for anyone, whether you have cancer, don't have cancer, have gone through it… I try to focus on [not] bringing up the past… and then [I try to] stop worrying about the future because I always used to be [the] one that was always trying to be one step ahead… so now I'm like, “Alright. Focus on the day. Focus on where I am right now. Focus on the task that I have at hand and take it day by day.”

Participants like Hope and Noelle, who both frequently used mindfulness to manage stress, suggested that generally, AYA-CS may find the practice daunting because “it's scary to not be busy and [it's] scary to do things like meditate, because then you’re like, ’Shit. Now I have to be just with myself in silence, and then what?” (Hope). Noelle also empathized, “when the body feels broken, it's hard to sit in it or with it.” These participants shed light on the discomfort that mindfulness may bring to AYA-CS, who throughout treatment, have already spent much time in isolation, contending with complex feelings and negative self-appraisals regarding their bodies and health.

Being able to frame mindfulness practice in a way that felt approachable was itself a barrier for several participants. When Francis understood mindfulness as a tool for “general use” rather than a clinical or specialized treatment, the practice felt more accessible. Most participants who engaged with mindfulness had been introduced to it by healthcare providers such as therapists or physical therapists, yet many were initially hesitant. Hope recalled that one of her first therapy sessions began with a grounding exercise designed to help her feel safe in her body. She described her initial hesitance:

I was so confused. I was like, “Well, don't you think I should just talk and you just tell me what to do?” And she’s like, “Well, don't you think we should just go through a breathing exercise, and you can feel for the stresses and feel safe in your body and trust yourself?” And I was like, “That actually sounds good, too.”

Gradually, Hope noticed how mindfulness helped her feel attuned to the moment, and she appreciated the guided mindfulness exercise that her therapist used to open each therapy session. Cherry, another participant who practiced mindfulness, regularly attended yoga and combined her meditation with manifestation.

Although these two participants practiced mindfulness frequently, they spent significant time exploring how to incorporate it into their lives, independent of the structure provided by therapy and yoga. Cherry, for instance, shared that guided meditations from YouTube, as well as meditations for manifestation, were helpful, “but if it was a regular just guided meditation for anxiety, I would usually fall asleep.” Hope encountered a similar challenge: “What I also find hard about meditation is I get so sleepy. I’m trying to meditate at night, and I would just fall asleep.” Hope and her therapist discussed alternative methods of adding mindfulness to her day-to-day life, but she found herself “with all these excuses on why I can't. So consistently, I would say no.” Indeed, another participant, Jenna, who acknowledged that she had previously benefitted from mindfulness during dialectical behavior therapy (DBT) sessions, said that “mindfulness was just hard to keep up with by myself.” She reflected, “It was pretty unstructured without the group. And I like having structure. I like having reminders that are outside of myself because I'm not very self-motivated to do things. I'm very externally motivated.” Together, the experiences of Hope, Cherry, and Jenna reflect the dissonance of knowing that mindfulness can positively impact well-being, wanting to leverage these benefits, and ultimately struggling to independently maintain the practice.

Participants who were not using mindfulness exercises struggled due to finding them “boring,” and it was difficult to maintain the habit when progress is slow and difficult to track: “Thing about meditation is it takes a long time. You need at least a couple weeks for it to work, right?” (Anakin). Natasha voiced her concern: “With anything, if I feel like it's going to take too long, I kind of spend more time overthinking it.” She acknowledged this was the opposite of mindfulness. Drawing inspiration from tools that have helped them maintain other habits, however, Natasha and Jenna imagined that gamifying mindfulness could make it more entertaining for them, especially when it can be difficult to notice any effects of mindfulness practice. Jenna, for instance, utilized a self-care and habit-tracking app, Finch, to maintain some of her daily habits; accomplishing daily habits allowed her to take care of a virtual pet bird and customize its home. Meanwhile, Natasha described how gamification helped her sustain her daily Duolingo activity: “The only reason I kept up with it is because I don't want to break the streak… Even if I just do one lesson, at least I don't break the streak.”

3.3 Theme 3: “If it were to come from another cancer patient/survivor, that means a lot more:” implicit mutual understanding among AYA-CS

3.3.1 Finding camaraderie in the AYA-CS community

As the AYA-CS discussed fluctuations in personal motivation and the effectiveness of being held accountable by friends and family, they also highlighted the importance of shared experiential bonds with other survivors.

One participant, Natasha, described meeting, through mutual friends, someone her age who was also in remission and had gone through treatment around the same time as her. She recalled how their friendship developed:

We both talked about what kind of cancers we had, what hospital we were in. But then switch more personal, what kind of movies we watch, what we like to do for fun. We bonded over superheroes, either Marvel or DC or both. That tends to be my opener. Usually, just Marvel. And we both have pets. So talking about animals, sending pictures of each other’s pets.

While their friendship deepened over several years, Natasha noted that meeting another AYA-CS “kind of gives us an instant connection even if we don't know everything about each other yet. It is a little bit harder to do that with somebody you don't know. But knowing that we have that experience in common is a little bit easier.” Cherry also described a similar sentiment of feeling “automatically connected” to someone once she learns that they are also a cancer survivor. She recalled one instance in which this happened:

I was in [city], and this person was just celebrating that they finally got cancer-free and stuff like that. Completely stranger. Did not know them. I think she was three times my age. I went up to her, congratulated her, and told her my story. And it was an automatic, just instant connection just because we have that understanding of what we went through.

Participants imagined scenarios in which the presence of another AYA-CS would have been comforting:

There’s only, I think, 90,000 of us diagnosed every year, and of course, in my immediate friends, there’s no one at the baby shower that gets what I’m going through. (Hope)

Looking for people who could also understand how she was feeling, Hope eventually discovered an Instagram profile that revolved around AYA-CS experiences, including memes and resources. This profile became a source of connection for thousands of AYA-CS, who became a part of a group chat that provided a massive international network of peer support. Noelle, a 33-year-old CS, was also a part of a similarly large AYA-CS group chat and shared, “That is why the most helpful thing that got me through treatment – that still gets me through when cancer things come up – is just actual just peer support, because it's so hard to find other AYAs in your own area.” Indeed, JYW, a 29-year-old man, had been involved in the AYA-CS community and saw, personally, that connecting with others has been impactful, especially for younger kids: “They’re like, ‘Wait, JYW has to work on things. He's not perfect, and he has to go see doctors here and there, but he's still having a successful, productive, and good life… They’re kind of like, ‘What did he do that I can do?” Thus, meeting other AYA-CS not only creates opportunities for peer-to-peer support but also peer mentorship. JYW, as a mentor figure, leaned into his vulnerability and authenticity to connect with and inspire younger AYA-CS. Connecting with other AYA-CS can not only provide emotional support but also opportunities for peer mentorship, a form of guidance rooted in shared lived experience that AYA-CS may find uniquely motivating and credible.

3.3.2 Avoiding overgeneralizations and essentializing AYA-CS experiences

While many participants were aligned on the instant or automatic connection that AYA-CS have with one another, this was not necessarily a sentiment expressed by all participants. Jim, for instance, was diagnosed and treated at a young age. His memories were sparse, and he was less likely to connect with other AYA-CS, particularly those who were diagnosed and treated later in life:

I feel like I'm not always able to relate on that level about certain [treatment] memories, just because, frankly, I don't have them. It doesn't change the fact that I still had it and that it still affected me in a big way… Doing psych evaluations, making sure I wasn't traumatized or that chemo didn't affect my development in any particular way… That’s a lot of the stuff that I remember from growing up. Nothing that was actually related to the physical treatment, really.

While Jim had no significant memories related to being in treatment, he did share how he felt during follow-up appointments, which involved frequent neurodevelopmental testing:

*Jim:* I would go to some of these tests that they would do, and it was a little frustrating. Just wondering, “Would I have been that much smarter if I never had cancer and never had treatments? Would I be different? Would I be more social?” …They would be having me do all these intelligence score tests and stuff like that, and that would be going through my head.

*Interviewer:* Is that something you've ever talked about with other survivors? Maybe people who've also had cancer really young?

*J:* I've never talked to other survivors in that way. Whenever it’s come up, it’s usually just coincidence, vs. support at work vs. just talking to somebody in the support group about the after.

Jim’s self-perception as an AYA-CS seemed to suggest that he did not quite “fit in” with most other AYA-CS who were diagnosed and treated later in life. Yet, he described an experience of survivorship that fundamentally paralleled those experiences described by other AYA-CS: entertaining the hypothetical scenario “what if I didn't have cancer?” Regardless, this made Jim uncertain as to whether he would be able to meaningfully connect with other AYA-CS and vice versa.

Similar to Jim, Jenna, a 26-year-old woman, found that she had trouble connecting with other AYA-CS, not because of her age at diagnosis but the diagnosis itself. While Jenna appreciated the ability to participate in AYA-CS community events and programming, she “also sometimes wish[ed] it was easier to find people with similar experiences” because having a shared diagnosis with someone, for her, would serve as a “foundation for maybe even a deeper connection.” While Jenna acknowledged that treatment differs by cancer diagnosis and individual, “at least with people who share my diagnosis [osteosarcoma], I know that you've experienced some of the same things that I have.” Jenna observed that AYA-CS who have more common cancer diagnoses (e.g., lymphoma, leukemia, breast cancer, lung cancer, etc.) could relate to one another more easily since this meant that they likely underwent similar treatments. Meanwhile, she could recall only a few times when she had met others with osteosarcoma; in other words, she struggled to find peers who similarly endured the “intense and debilitating” treatment course that she did. Her experience underscores how survivors of rare cancers may struggle to find diagnosis-specific peer connection even within broader AYA-CS communities:

It left me with physical handicaps. It left me with kidney failure. It was mostly inpatient. People who had outpatient chemo never really stayed in the hospital, and their regimen was very different. I have a harder time connecting because although we both have had cancer, what that’s been like for us has just been so different.

Age at diagnosis and treatment, as well as the diagnosis itself, could differentiate how AYA-CS relate to one another. Another factor that participants identified was gender. Maria recalled that in her survivor support group, questions “about having kids” were directed more towards women than men. This parallels the gender-specific considerations of survivorship that other participants had shared, including romantic relationships, family planning, and gender expression. For Cherry, there were a myriad of topics that she identified as specific to being a woman AYA-CS. Her leg scars, for instance, impacted how she chose to dress herself: “They’re literally down to my knees, so I don't wear skirts, and if I do, they have to cover my knees… I feel like only a woman could understand that.” She also imagined that it would be helpful to talk to other women about their experience with hair, wanting to ask about “how they grew their hair back, if they did anything like castor oil, if they wore wigs or headbands or hats, the way they want about hiding the bald head, or if they just embraced it.” Indeed, hair and fashion were important to other female participants because of how they used both to express their femininity. The loss of hair held a deeper meaning for these participants given the significance of hair to their personal identity. Cherry continued, “I just think this is something a woman would understand more. Especially to me, my hair means a lot. I had [cancer] when I was really young. One of the main things that really bothered me was kids my own age, like, ‘Oh, is that a boy? Is that a girl?”

Taken together, these results illustrate the need to balance unifying AYA-CS based on the shared experience of cancer and acknowledging that there is no singular cancer experience. While shared identity as survivors can foster connection, participants emphasized that differences in treatment intensity, long-term effects, and developmental contexts often shape how relatable those connections feel. Participants alluded specifically to factors such as gender, age, and diagnosis as differentiators of experience, underscoring that survivorship is not a monolith. JYW stressed the importance of recognizing this diversity, noting that, “whether it's cancer or with my mental health stuff, it's not a one-size-fits-all. Everyone's treatment journey and recovery is different.”

4 Discussion

This study explored AYA-CS development, stress, and well-being, including how they understood the role of survivorship in their lives one or more years post-treatment. Similar to past research on AYA-CS (47), the findings indicate that the simultaneous transition from treatment to survivorship and adolescence to emerging adulthood is characterized by feeling behind in life, as well as loneliness and grief, which led to some disruptions in overall well-being. While not all participants described a profound impact of cancer survivorship in their day-to-day lives, many encountered challenges ranging from coping with occasional reminders of their compromised health to all-encompassing debilitating lifestyle changes. In a similar vein, cancer survivorship was important to self-identity to varying degrees. A small portion of the sample, especially those who had spent less time in treatment, were diagnosed and treated during early childhood, and/or faced fewer or less intense long-term treatment side effects, found that being an AYA-CS held little semiotic weight in how they perceived themselves. By contrast, those who had undergone more aggressive treatment, were diagnosed and treated during adolescence or later, and/or lived with chronic conditions seemed to perceive cancer survivorship as having greater salience. Regardless, all participants named stressors that were consistent with emerging adulthood, such as work, social and romantic relationships, and, more broadly, the future (16). Cancer survivorship, in many cases, undergirded these stressors. For instance, participants whose treatment spanned their undergraduate degree programs identified that cancer had left an indelible mark on their career trajectory, and they believed that they were now “behind in life,” relative to their peers who did not have cancer. At the intersection of cancer and gender, female participants described concerns about their appearance, especially the health of their hair, as well as navigating dating relationships and family planning. This is consistent with prior work that has similarly highlighted identity-linked concerns (e.g., fertility, body image) among female AYA-CS (48–50).

To cope with these stressors, participants relied heavily on social support from family and friends, a finding that is consistent with a past study done with a younger sample of AYA-CS (27). Unlike this past study, however, the participants in our sample noticed that often, specifically in the context of survivorship-related stressors, there was a disconnect between themselves and their family and friends, who had no personal experience with cancer diagnosis and treatment. For this reason, many sought online AYA-CS communities, groups of people who would have similar stories and would be more likely to empathize with them, underscoring the value of connection grounded in shared lived experience. Indeed, developmental research has indicated that peer relationships play a central role in emotional expression, identity development, social comparison, and even motivation for healthy behaviors (51, 52).

In this study, participants leveraged social support from their family and friends to keep them accountable to initiating and sustaining independent forms of stress management. Exercising, the most common stress-relieving activity in the sample, took forms such as strength training and walking or running, a finding that parallels that of a past study on adult lymphoma survivors (53). Although each participant described the positive impact of exercise on their mental and physical health, they also acknowledged challenges with independently sustaining their routines. Involving family or friends as accountability partners, however, proved effective. Several participants noted that accountability itself can increase motivation, describing how being answerable to someone else encouraged them to “push hard” (JYW).

By contrast, mindfulness and related practices were not as commonly used by participants, though most of the sample had previously been introduced to mindfulness throughout treatment and understood its benefits. Several barriers to implementing mindfulness practice emerged. Some participants described it as boring or difficult to sustain, emphasizing that progress could be slow and hard to perceive. Even participants who used mindfulness echoed these opinions and shared similar challenges when it came to sustaining their practice. Overall, these perspectives align with findings from a larger study, which examined a national sample of college students and their perceptions and beliefs about mindfulness (54). In this past study, beliefs such as mindfulness requires patience to learn and mindfulness comes more easily to some people than others were held by AYA-CS. Unique to this study, however, is the perspective of AYA-CS on survivorship-specific barriers to practicing mindfulness: some AYA-CS might find it intimidating to sit still in their bodies, which had previously been unsafe to them. Still, some participants described an openness to trying mindfulness, especially with other AYA-CS peers. Indeed, one participant, Jenna, recounted the profound impact of structured group therapy sessions on her ability to stay motivated and engaged.

4.1 Implications

This study has several implications, particularly for intervention research and design. The findings suggest that programs designed for AYA-CS may optimize engagement through the incorporation of peer-based support, especially given participants’ emphasis on the unique challenges that they believed only other AYA-CS could understand. Situating health and well-being in the context of social determinants of health, this is consistent with literature on social prescribing, wherein clinical providers link patients with non-medical, community-based resources (55). Prior research has demonstrated that social prescribing is feasible for cancer survivors (56) and effective in helping them navigate survivorship care (57).

AYA-CS peer coaches may be uniquely positioned to offer relational support grounded in empathy, credibility, and experiential knowledge, qualities that participants valued in their encounters with other survivors. For AYA-CS, connecting with peers can provide support based on lived experience, upward inspiration, and space to discuss sensitive survivorship concerns, which clinician-delivered care may not fully replicate (58, 59). Peer-based approaches have also been shown to foster shared understanding (60), social connection (61), improved peer support (62, 63), and normalization of survivorship experiences (64). These findings underscore the importance of peer-based support as an AYA-CS intervention design implication requiring further testing for feasibility, acceptability, safety, and effectiveness prior to implementation. It must also be noted that while AYA-CS do share similar experiences with one another, our negative case analysis simultaneously foregrounds heterogeneity among them, including their individual treatment experiences, treatment-related disabilities and health complications, construction of personal identity, and, subsequently, sense of belonging in the broader AYA-CS community. Thus, the impact of peer relationships on psychosocial well-being must be considered within the context of the quality of these peer relationships, namely the degree to which individuals identify with one another. Intervention design must be responsive to this diversity and avoid being reductive of AYA-CS's survivorship experiences by, for example, matching indivduals based on diagnosis, gender, age, or survivorship stage (65).

Accountability, defined as the expectation that one may be called upon to justify actions or inactions (66), was viewed as a mechanism that actively strengthened participants’ engagement with stress-reducing activities. Within a peer-coaching model, accountability becomes a shared process: trainees set goals collaboratively with their coach, creating clear expectations for practice (e.g., logging into an eHealth program several times per week), consistent with the supportive accountability model (44). Participants also emphasized that accountability must be delivered through supportive, non-shaming feedback that encourages reflection and growth, an approach that aligns with a preference for positive motivators over punitive ones. While monitoring can be harmful when perceived as controlling or inadequately explained (67, 68), peer coaches can provide gentle oversight, encouragement, and follow-up in ways that feel collaborative rather than punitive or shaming. Together, these insights highlight how peer coaching can operationalize supportive accountability—through shared goal-setting, transparent expectations, and nonjudgmental monitoring—to strengthen self-management and sustain engagement with mindfulness practices.

Applying supportive accountability to the design of a mindfulness-based intervention for AYA-CS also addresses participants’ observations that intrinsic motivation itself changes constantly and could negatively impact their ability to sustain health habits. Both intrinsic (e.g., wanting to grow or become more mindful) and extrinsic motivation (e.g., not wanting to disappoint someone) moderate the relationship between accountability and adherence (44, 69). Peer coaches can help with articulating personally meaningful goals and reinforce intrinsic motivation over time. As such, a peer coaching model can cultivate both accountability and motivation, supporting sustained engagement with mindfulness practices.

In light of potential harms and challenges such as privacy concerns, peer burden, misinformation, and risks related to inadequate training or supervision, peer-support based interventions must be designed with safeguards. For instance, protocols for crisis escalation must be established. Additionally, scholars on peer support-based interventions have yet to reach consensus on methods of balancing empowerment with oversight and of ensuring that peer coaches are supported rather than exploited (70). Future intervention design may also contend with these challenges and consider how best to address them.

4.2 Limitations

Findings should be considered within the context of a few study limitations. First, although we interviewed participants until saturation was reached, the final analytic sample was limited in terms of racial, ethnic, and linguistic diversity, precluding our ability to explore the experiences and perspectives of minoritized AYA-CS. As health disparities are increasingly understood through the social determinants of health (SDH), researchers have found lower health-related quality of life among Black cancer survivors due to a multitude of environmental, economic, and social factors (71, 72). Similarly, the eligibility criterion of English proficiency at a conversational level prevented non-English speaking AYA-CS from participating, though they may experience heightened stress due to linguistic barriers that negatively impact their ability to navigate the U.S. medical system, communication with care providers, communication, and access to survivor-specific resources and supports (73). Future studies may purposively sample AYA-CS and apply intersectionality to better elucidate the complexity of survivorship among emerging adults whose identities rest at the nexus of multiple systemically oppressed identities (e.g., gender, race, citizenship and migrant status, disability, and class).

Additional inclusion and exclusion criteria constrain the sample, data, and analysis. The data are subject to recall bias, especially given the lack of an upper bound on the inclusion criterion of one-year post-treatment completion. In the interviews, participants were asked to reflect on experiences over the course of up to the past 28 years. Further, the eligibility criterion of age 18–39 ensured legal autonomy but captures a wide developmental range that includes differing and potentially divergent needs. Indeed, our sample ranged from 22 to 35 years old, which may include AYA-CS who are recent college graduates and those who are starting a family. Future studies may target a smaller age range of AYA-CS to further investigate age-based divergent needs and guide intervention designs that are responsive to developmental diversity in this population. Meanwhile, variance in participants’ emotional health and well-being was limited by our main exclusion criterion of being in treatment for PTSD, psychosis or epilepsy/seizures. Therefore, the data did not capture the perspectives of AYA-CS who may experience greater psychological distress. A similar qualitative study with this subgroup of AYA-CS may offer additional insight on stressors and stress management strategies or challenges that were not described by our sample.

Although purposive sampling allowed us to ensure that we could answer our guiding research questions, self-selection bias may have influenced the data. AYA-CS who volunteered for the study may differ systematically from those who did not. Indeed, during screenings and upon interview completion, many remarked that their motivation for participating in the study was to help other AYA-CS, which could suggest a proclivity for seeking AYA-CS community and/or providing peer support. This may be especially true of those who were recruited via the non-profit, which is itself a network of individuals in the AYA cancer community and defined by its mission to combat social isolation among AYA-CS and their caretakers.

Study limitations with respect to data collection must also be considered. While participants disclosed treatment types and intensities, recurrence status, and current survivorship status during their screenings and interviews, these data were not formally recorded through the demographic questionnaire, limiting the contextualization of and transferability of our findings. Additionally, while prior qualitative studies have suggested that Zoom interviews can facilitate disclosure and allow data collection across a larger geographical area, they limit the ability to observe nonverbal cues (74). Finally, although our strategies for rigor included reflexivity, we did not utilize member-checking, which is typically used to enhance the trustworthiness of qualitative findings (75).

4.3 Conclusion

This qualitative study foregrounds the lived experiences of AYA-CS and their personal reflections on the role of survivorship in their self-identity and day-to-day stressors. Beyond this, we illustrate the resilience and self-efficacy of AYA-CS, who utilize stress-reducing strategies that help them cope with challenges related to emerging adulthood and survivorship. Leveraging social support, the AYA-CS of this study found effective methods to sustain important health habits even when they struggled with low intrinsic motivation. They also, however, acknowledged personal barriers to diversifying their stress management strategies with mindfulness practice. These findings support the development and formal testing of peer-supported, developmentally tailored stress-management interventions for AYA cancer survivors.

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Supplementary material

The Supplementary Material for this article can be found online at: https://www.frontiersin.org/articles/10.3389/fradm.2026.1922383/full#supplementary-material

Supplementary material Supplementary material at the source

Footnotes

Edited by: Jonathan D. Fish, Hofstra University, United States

Reviewed by: Olle Jane Sahler, University of Rochester, United States

Jazlan Jamaluddin, University of Malaya, Malaysia